I know that I have not updated Jordan's website in a very long time. I am sorry. I truly did not mean to let anyone down. I know that a lot of people have been praying for Jordan and our family and I should have kept them informed. I just reached a point where I was totally overwhelmed and could not keep up with it all. This has been a very difficult journey for our family. There are often no words to express the emotions that we feel, no way to convey the the ways it has changed not only our lives, but the very core of us as human beings. As a family, we have wanted Jordan's website to be a place that conveys faith, hope and love. As the months and even years pass, it has become more difficult to watch our precious loved ones struggle with this tragedy. In the beginning, it seems that you can take on the whole world if necessary...but as time passes it becomes more difficult to remain strong. This did not happen to just Jordan, but to every one of us. No matter the final outcome, we were all forever changed that day. We can never go back to being who we were prior to June 17, 2006. We can choose to see the positive when we look at Jordan's story, but it is not easy to live with the realities of too little time and too little resources to do all that we desire to do to help Jordan and to meet the needs of our whole family. Sometimes it seems that even if we ignored the needs of every other family member except Jordan, it would still not be enough to accomplish all that is needed. We obviously could not or would not do that and yet we know that if we could devote more time to him, he could improve that much faster. It is obvious to see his improvements when we have a burst of energy and motivation to concentrate on some new goal with Jordan. We almost always experience some success. And then we realize that all of us continue to have needs that must be addressed also. My husband and I both work about 60 hours a week or more to provide for the financial needs of our family. Jordan's mother, Jeannie concentrates on Jordan, medication refills, doctor appointments, therapy sessions, nurse schedules, nutritional needs, and still makes time for her other three children. In my "spare time", I home school Jordan's siblings. (Helping them "see" God's fingerprints on history, as well as their own lives is my passion!) I also love spending time with my youngest daughter who is in college and works two jobs most of the time. My husband is also finishing his degree, so it is a challenge for us to make time for each other as well. Jeannie and I try to manage the household duties between us and her two oldest children. Still it leaves us all with a perpetual feeling of never having done enough and it is very frustrating. Sometimes I wonder what would happen if one of us were not able to keep going like this. It was really a scare when Jeannie developed diabetes and experienced several bouts with a heart condition. I really don't know how single parents can cope without help. Even devoted friends and family become impatient with you when your life never returns to "normal". Sometimes it is too painful for them to remain so close to you, so they fall by the wayside. One of my closest friends said once that she felt she would have to move in with us and work 24/7 in order to do all that needed to be done. It overwhelmed her and she wasn't even here all the time. Eventually she was just not able to deal with it, no matter how much she tried. She is a beautiful Christian lady and I will always cherish our friendship. Trust me I often feel we could all work 24/7 and not get it all done. Still there are a select few who truly run the race with great endurance, even to the point of loving you, even when you feel incapable of loving yourself. . When you feel that you are falling so short of your own expectations, as well as the expectations of others, it is hard to keep things in perspective. It is often our own inability to cope with our personal shortcomings more than anything else that provides the most frustration. Who am I to offer encouragement to others when I can't cope successfully myself? Still I thank God for those wonderful people who unconditionally love me and my family in spite of all of our difficulties and shortcomings. I do see them as the great blessing that they are to all of us. Their prayers and encouragement help us to go on even when we feel that it is impossible to continue on and yet we can't give up on our family or on Jordan. It is downright exhausting. And it breaks my heart every day when I see the toll it has taken on every single member of our family. They have not only willingly sacrificed time and time again to do for Jordan without a second thought; it is deeply painful to see our sweet Jordan struggle so immensely for each tiny inch of success. Unless you have experienced this, it is hard to understand. How do you explain to someone what it is like to work until you are completely exhausted to the point of tears and know that it still does not meet the need? There are no quick fixes, no overnight successes, and few answers to many questions. Instead there are many sleepless nights, much work to be done, not enough money to stretch to do all that you feel you must, and yet you have to keep trying. You cannot give up ...ever...especially when you look into the eyes of your family and know how much they are counting on you.
And yet there are many families like ours who are struggling in a way that I did not even know was possible prior to Jordan's accident. There are single moms and single dads who try to bear this burden alone. There are grandparents who take up the torch and try to care for their grandbabies. So many lives have been devastated by an illness or an accident or a birth defect that transforms their existence into something so foreign from what they have previously known that they don't even recognize their own lives. You want to reach out to them and help them, because you understand and share their pain, but you are often so overwhelmed with your own situation, that you can only pray for them and continue to pray for your own family as you carry on with the struggle. It seems like a vicious cycle of fervently desiring to make a difference and then like a fly caught in a spider web, feeling helpless to help yourself much less anyone else.
Jordan's blog was our way of reaching out to offer hope to others. Reading someone else's story was what got our family through the long nights at the hospital, the utter sense of hopelessness, and the many unanswered questions. The sad thing was that we were not offered any plan of action, any resources, and very few answers from the professionals during Jordan's initial hospitalization. I did not understand at all, nor did our family. The blog of another near-drown offered some answers, some idea of what to expect, and the hope that if one family had survived this event, then maybe ours could survive as well. I wanted to reach out to others as they had reached out to us. So I began writing a sort of diary/blog of Jordan's journey....successes and failures. I felt it was a way of providing a lifeline to others like we were given by someone else. I thought there would be strength in numbers…a literal army of prayer warriors.
Without verbalizing it, I guess I expected a miracle. I think we all did. We wanted a real "Lazarus walking and talking type of miracle" and I wasn't ready to accept anything less. The day to day struggle, the tiny milestones that we continue to reach, the time together is the type of miracle that we were given. Even though it is not the kind of "miracle" that we envisioned... it is no less a miracle. After more than three years, I still do want my Jordan back...the one I lost on June 17, 2006. I will always miss the Jordan that got up at 6:00 AM every morning begging to go outside to play in the sandbox, still in his night clothes. I remember his insistence on eating some "gummy bears" before supper. He loved to find Barney the purple dinosaur on my computer. I miss the sound of his voice, his mischievous smile, the musical tone of his laughter. So many things I miss. I feel cheated for all of us. The most difficult thing is the feeling that my sweet Jordan is being held captive in a body that he cannot control, combined with the terrible frustration of not even being able to communicate all that he is feeling. And we often feel powerless to help him. We are all trapped in a nightmare that we cannot wake up from. No one can escape that quiet desperation. I think our whole family feels it. We just don't talk about it...so how could I continue to write a "cheerful blog full of sweetness and light and hope". Every time I sat down to write ...and I did try to write many times...I just could not do it.
That is not to say that we have not had many blessings and many successes, as well as a few setbacks during that time. And I am still praying for my full blown miracle. I am not giving up on it. I am still dealing with this issue, but I will try to give updates on Jordan anyway because I am immensely grateful for the gift of each moment and each tiny measure of improvement no matter how small. I am also extremely grateful for the loyal prayer warriors who still pray for Jordan and our family after all this time. Once I start counting Jordan's new achievements, there is really quite a list of them.
Jordan has a great deal more movement and control than he once did. He can move both arms and legs, as well as hold his head up. He can sit for short periods of time with very little assistance. Also he can balance himself while using his arms and hands for short periods of time. He can roll over on the floor on cue with a little help, but can roll over on an exercise ball with very little assistance. He can control a switch toy with both hands. He can use a pulley to exercise both arms and legs at the same time. He can turn his head in both directions and look to see a person or look out a window. He can reposition himself for comfort. Even though he no longer takes any tone medicine, he can control the tone himself most of the time. In other words, he can relax on command or use the tone to help him accomplish the things that he wants to do. His tone is being replaced with muscle control. We see more and more improvements, although it is a very slow process. He is much stronger on the left side at this point, but still able to use both sides. His facial expression is much more defined. He can wrinkle his eyebrows and can almost smile, as well as frown. He is definitely expressing emotions, likes and dislikes, as well as desires through body language and eye gaze, as well as through answering yes and no questions with pre-set signals. He is still improving on driving his power chair. We do have many things to be immensely thankful for.
As for the setbacks, we have begun to see Jordan have a few bouts with pneumonia and it appears that his trach is possibly colonized with Pseudomonas. We are fighting contractures like never before, but it seems to be because he is finally growing due to growth hormones that he has recently started. So far the physical therapy has helped us to fight the contractures successfully and we are still not seeing any scoliosis. With proper diet and a lot of therapy, I do see the potential for a lot of continued improvement. It has been a great deal of work for all involved...but well worth it.
Jordan was swallowing and we were preparing to remove the trach due to vital stim therapy when insurance decided that they were not going to pay for that therapy any more. We were fighting that decision when Jordan came down with his first bout of pneumonia. We lost the appeal due to taking care of Jordan in the hospital and have had several bouts with pneumonia since then. We intend to try again and hopefully we will succeed this time.
I guess that is going to be our new motto. “We will just keep trying until we succeed." Giving up is just not an option for any of us. And I will keep on praying for miracles not just for Jordan, but for all of us.
